Hello everyone,
I have a spinal cord lesion at C2-C3, neuro has said ‘probable transverse myelitis’ . He referred me for a brain MRI, to check for other lesions there. I had the scan yesterday and am now wondering what to expect for follow up.
I already have a follow up appointment with the neuro booked for 8th May (this was booked straight after my first appointment).
What I’m wondering is whether they are likely to contact me or write to my GP based on the MRI results before 8th May, whether or not the brain is clear. I’ve been copied into letters between the neuro and GP (which is how I found out about the ‘probable transverse myelitis’!) so don’t know whether he might write to GP again and say “clear brain MRI” or MRI shows lesions, or the like. Or whether it will all just wait now until the follow up appointment in May. The radiographer said yesterday “well they’ll contact you if there’s anything untoward” - but actually in the case of demyelination I’m not sure that’s true at this stage, as I already have a follow-up booked - and I assume the purpose of this will be for the neuro to give me his reckoning based on all the evidence together.
This is all NHS.
So I was wondering about your experience - whether or not a particular scan was clear, did you hear anything before your follow up?
Thank you! 
Sarah
Hi Sarah
In a way, it doesn’t matter what experience others have had, because it doesn’t follow that you would mirror their experience.
In your position, I’d write to the neurologist and ask directly what results he’s found from the MRI. You could ask in that letter whether you should be expecting an earlier appointment than May since that seems a long way away.
That way, he can either put his findings down on paper (i.e. write directly back to you), or give you an earlier appointment to explain in person.
In recent times, I’ve found that writing old fashioned letters and posting them via snail mail actually gets me further than by using phones, email, etc.
Sue
Thank you Sue. I guess that would apply to many of the questions posted here! I suppose I was just asking out of interest and perhaps to find out if there is a typical pattern for these things - I feel a bit ignorant and don’t have anyone to ask without bothering the GP or hospital. Actually from what I’ve read since posting the question it seems a few weeks is not that long to wait for MRI results in the NHS system, so maybe I’ll just exercise some patience! Result will be the same in any case! But yes, if i feel desperate to know, I’ll write a letter - good tip, thanks !
Sarah
Hi Sarah
The biggest problem you (and anyone else stuck in limbo) face is that there is no ‘typical’ start to MS, just as there is no ‘typical’ set of symptoms. Plus, so many symptoms that can fit into the MS model could also have other causes.
It’s bloody hard to wait for results that could impact on your life. All you can do is try to wait it out without getting stressed by it. And if you can’t bear to wait, then try to hurry it up as I suggested. There’s no telling whether or not it would work with your neuro anyway.
All the best.
Sue
Thank you - and apologies, maybe the way I worded this wasn’t clear. I understand that MS symptoms are different for everyone and that is the nature of the disease. I wasn’t asking about the likelihood of MS or about any typical pattern of symptoms, but whether there is a “typical pattern” of MRI follow up on NHS when they are looking for inflammatory lesions in different parts of the CNS - e.g. Do people tend to be contacted with results in advance of a pre-booked follow up. In any case the answer is probably no typical pattern there either! I’m not too impatient at the moment - the last few weeks have flown so I expect the next few will do the same! I’m finding it fairly easy to stay calm at the moment as thankfully my symptoms seem relatively mild, so counting my blessings!
Anyway thanks again for taking the time to reply
all the best
sarah